Jennifer Shaw

Hi. Let me start by assuring all friends and family, we’re fine. Our situation is not dire, and our family unit remains strong.

However, in the spirit of honesty and transparency, I do want to share a little more about our recent struggles with our autistic daughter’s behavior. I believe such honesty is important because it sheds light on what some of us are challenged with, and that increases autism understanding and acceptance. It might also help another family feel less alone, or it might be an opportunity for a reader on their own autism journey to share some wisdom with me. I always welcome that.

So, here we go. Again, I don’t mean to alarm anyone. I just want to be truthful and authentic.

When Daphne was little, she was compliant and almost always happy and sweet. She was rarely disobedient and never aggressive. We didn’t really have to discipline her. If she did something she shouldn’t, we simply redirected her and she obeyed. That was it. I got used to that and was grateful for it. It felt like a small piece of luck, or perhaps a small favor, on an otherwise unforeseen and sometimes-frightening journey into the world of disability.

I remember thinking, we can work on everything else–the delays, the challenges, the fight for services if it comes to that– and it will all work out in its time. If it doesn’t, we can adapt. As long as Daphne’s happy, that’s all I care about.

It made the shock of her diagnosis bearable, and we had eight years of relative peace.

It wasn’t until the summer of 2023 that she got moodier. She was grouchier and cried a lot more often, sometimes without any apparent reason. Her dad and I struggled initially with a lot of impatience and aggravation until I talked to her pediatrician. As it turned out, Daphne was on the cusp of puberty, and her poor little body was flooded with hormones. Thus, the mood swings. It made sense, and I accepted our daughter’s more-erratic emotions as our new normal. At least she didn’t self-harm or hurt anyone else, I told myself. I worked on being more patient with her and giving her more structure as needed.

Over the past few months, though, she’s become aggressive. She’s bitten and thrown both her AAC and play iPads, destroying three of them (she is now allowed only an AAC iPad). She’s begun to slap her own head occasionally, too. And, she’s begun to lash out at her caregivers, particularly me and her one-to-one aid at school (I’ll call her Miss G, for the sake of her privacy).

This is the hardest part of Daphne’s change in temperament. Her pinching, kicking, scratching, and occasional biting not only cause me anxiety and physical discomfort, they’re emotionally painful. She tends to get hostile when I’m helping her with her personal hygiene, like brushing her teeth or hair or helping her shower. Sometimes it happens when I’m helping her get dressed. It’s made me start to dread these parts of our day.

Worse, I suffer massive guilt when she scratches, hits, or bites her aid. Miss G is a paraprofessional, so she’s paid utter peanuts for work that is physically and emotionally taxing. She does NOT deserve such treatment, no matter what my daughter’s challenges are. Thankfully, that hasn’t really happened yet this new school year–Daph’s had a good start this fall, thankfully–but I’m sure we’ll have incidents.

Daphne gets rough with Miss G when she doesn’t get her way immediately or when she doesn’t understand something. For example, there was an incident last year when the students had to go back inside from recess because the ground was too icy. Daphne didn’t understand why they had turned around and gone right back in. Out of frustration, she bit Miss G as her aid was guiding her back through the doorway. Miss G showed me the mark when I picked Daphne up from school.

My worst fear is that Daphne will hit or bite another child. A classmate, or someone outside with her at recess. Even though an adult is always beside her, her mood can change fast, and she can turn on you with little warning, which also makes all of this so troubling. It’s sometimes hard to anticipate when she will get rough.

If she hurts another student, I don’t think we’ll be able to keep her on her general ed campus. We’ll have to consider alternative schools.

I believe this aggression is a result of a combo of things: the hormones of puberty, a greater understanding of her differences, the development of her own will and desire for autonomy, and her limited communication. I don’t believe there is any medical issue behind this, though of course I don’t know that for sure. I try to keep my eyes open for any physical/health-related concerns. We see none, however, and her doctor verified that her physical growth this year has been “excellent.”

So, if it’s just growing up that’s causing this, then that’s good news. I want my daughter to have a will of her own. I want her to desire autonomy and independence. All of those things are healthy and give me hope. I want her to be her own independent, capable person.

I’m trying to encourage that, too. I’ve begun to ask her if it’s ok for me to brush her hair, or help her wipe, etc. She seems to like that, and if she signs “Yes,” I’m less wary of touching her. I’ve also been encouraging her to wash herself more in the shower. I’ve told her, once she can get herself clean, she won’t have to tolerate me crowding her. She has signed “Yes” to that, so I think she understands it.

We just need to help her learn how to manage her anger. And we, her parents, need a clearer idea of how best to discipline her.

These are my challenges right now. All people feel anger and frustration; they’re natural human emotions. And all kids (and some adults) need to learn how to regulate these big feelings.

With Daph, though, it can be hard to tell what’s wrong and to gauge just how much she understands, given that she can’t tell us precisely how she’s feeling or what exactly made her angry. She does sometimes say “Frustrated” on her talker, which is great. We’ve worked hard to model these emotion words so she can identify and communicate them when she’s feeling a certain way. And that’s a good step, but it still doesn’t give her a specific, safe way to redirect all that frustrated energy. This is what we’re specifically lacking right now. We need the right anger management strategy.

Last year, her OT suggested she use a squeeze ball when mad. Jer order a few this summer, but when they came we realized they were the kind filled with a jelly substance, and Daph’s jaws are so strong, she bit right through a couple of them, coating herself with the substance and even ingesting some of it. That was a failure, obviously, and then we went through that two week period of incontinence, so in the midst of all that, I didn’t replace those balls with anything better. I’m still open to using this coping strategy, but we need to find the right ball. A super-strong, most-durable-on-earth kind… not sure if any of those even exist.

My first monthly meeting with her school team is this Wednesday, so that is a question I will ask them. Can they recommend a specific, hands-on anger management tool or technique? And, how do we best discipline her, so we’re not inadvertently punishing her for something she can’t help, like a lack of understanding or an inability to specifically express herself?

Our current discipline method is giving her a time-out. If she gets so angry that she’s stomping, kicking, scratching, pinching, or biting, her dad sends her upstairs to her room, and we temporarily take away her iPad if she has bitten or thrown it.

That way, her consequence is removal: of the thing she threw or the person she hurt (me), plus alone time, which she doesn’t like. It also gives Jer and me the opportunity to cool down so we’re not tempted to scream at her or spank her.

It’s tough for me to remain calm when she tantrums; it still amps me way up (though I’m working hard to self-regulate) and then I want to respond with harshness too, which is terrible modeling. Plus, I feel like reciprocal aggression erodes our healthy bond as a family, and that is the last thing I want to do. We need to remain tight and trusting of one another in order to navigate all the rough patches in our lives.

I will update you on her team’s advice.

We had a nice day this past Sunday, but it was also a day typical of our lives now.

We went for an easy hike out in the forest around Island Pond, down to the Moose Bog Boardwalk.

Daph seemed fine during the first half.

But as we approached the swamp, she got agitated.

I think she was expecting a lake she could swim in. She halted, wouldn’t go any farther, and started to stomp and whine.

Another family was already there, sitting quietly waiting for the birds to land on the dock and eat the peanuts they’d put out for them. Realizing we were intruding on their nature watch, we immediately turned around, ushering an increasingly-angry Daphne away. I felt guilty for the intrusion and disappointed we couldn’t stay for a longer look. We had to coax Daph back along the trail, and my stomach clenched with fear that she would start to scream and bite. She complied, ultimately, but it put a damper on things. I felt that live wire of guilt and anxiety running all the way through my body.

That’s basically our new normal.

Like I said, we’re ok. We’re just in a rougher phase, but we’ll get through it. It will take a little more consideration and work than her dad and I have ever had to do, but our daughter’s welfare is our first priority. I just have to tell myself that it’s ultimately not my fault. That I’m not a rotten parent and I can figure out how to help her. My inferiority complex wants to rear its ugly head in this context, too.

One day at a time.

I hope all is well with you. Again, feel free to share anything you’d like.

See you next week.

XOXO,

Jenn